Patient Advocates: The Link Between Patients And Pharma

Over the last several months, I have attended or participated in a variety of online health conferences and roundtables and seminars and have been struck by a consistent theme: increasingly patient advocates are looking to engage with pharma companies to share their insights and learn. It seems that pharma companies (at least the smartest of them) are seeking more and more feedback from leading patient advocates and trying to establish ongoing, direct relationships. This can only be a good thing and it wasn't always this way.

Online patient communities have often had a skeptical, if not hostile, view toward pharma companies and their online communication efforts. For their part, pharma companies have been scared of having any sort of presence next to the real-time, unedited and often un-moderated user generated content typically found in the forums and discussion boards of online patient communities. Some of pharma's reluctance has to do with regulatory uncertainty and legal risk, but some of it is simply being unwilling to address concerns and complaints about their products.



I am pleased to see this changing. Better communication between pharma companies and the individuals depending on their products can only help improve the quality of treatment and build trust. As Ann Bartlett, a leading diabetes patient advocate, pointed out on a recent panel many patients with chronic conditions are "married to pharma for the rest of their lives." From pharma's perspective, patient advocates are perfect sources of feedback, insight and can provide a link to the broader patient community.

One key element that I have heard several patient advocates stress is that there needs to be greater transparency from pharma companies with respect to the regulatory restrictions that limit the way they can communicate about their products. Though patient advocates and active members of online patient communities are typically very knowledgeable about their conditions and the related treatments, it is often not clear to them that pharma companies operate under very strict regulations regarding direct to consumer communications that are promotional.

As pharma companies seek to increase their presence online and their engagement with patients, it would make sense for them to build strong, lasting relationships with the patient advocates who are so influential online. While the patient advocates will be sensitive to remaining independent and not merely becoming a mouthpiece for pharma companies, they can be powerful validators and opinion leaders. For example, having an online patient advocate interview a pharma company's lead researcher for a condition and post that on his or her blog. In addition, patient advocates can help share information regarding clinical trials within their communities, and possibly help with recruitment. Obviously, to the extent that there is money changing hands, that will need to be clearly disclosed. Even just gathering the leading patient advocates for a particular condition for a quarterly meet-up / webinar could provide valuable insight and feedback.

Though all of this seems very straightforward, there is a significant opportunity for patient advocates and pharma companies to help each other in way that would help us all.

3 comments about "Patient Advocates: The Link Between Patients And Pharma ".
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  1. Robyn Brooking from BMC, February 25, 2011 at 12:30 p.m.

    Oh how I continue to hope that pharma companies 'seek to increase their engagement with patients' but not going to hold my breath. Here in Canada, our pharma companies prioritize prescribers and payors --follow the dollar -- and patients using the drugs? Well, if they have a problem, they can call their doctor.
    What other industry abdicates their end-users?

  2. Alicia Staley, February 25, 2011 at 4:32 p.m.

    Hi Alex,
    Great article. Thanks for taking the time to highlight the work that patient advocates and health activists are doing to build partnerships with Pharma. As a 3x cancer survivor, I view the possible link between patients and pharma to be a good thing! I'm hoping to see more pharma companies reach out to patient advocates and begin building stronger relationships. Like you mentioned, many patients (consumers!) don't understand the framework within harma companies have to operate. I hope to learn more about this soon. Keep up the great work. Thanks!
    AC Staley

  3. Paula Lynn from Who Else Unlimited, March 29, 2011 at 8:26 a.m.

    The cost is more destructive than the drugs. Funny, you don't mention it. In other countries, the same drugs can cost 90% less and the pharmas are still making a fortune. The cost of medications can easily send people into bankruptcy. Happy linking.

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